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I am just curious how many pwMS have facial paralysis or facial puffiness ( edema) as part of an MS attack?

My daughter had this happen last summer just before her diagnosis. It resolved over a 24 hr period.

A month later she was diagnosed and treated for CCSVI. interestingly the facial paralysis was on the right and her partially blocked IJV was her left as was her Azygos profoundly blocked.

So I believe the right sided IJV was taking the Lion's share of the emptying especially at night when supine. This may put pressure or extra fluid deposition in the facial tissues and press on the facial nerve which lies in that vicinity causing paralysis.

Her paralysis started when she was lying in a supine position.

I have since discussed this was 2 IRs that do PTA for CCSVI. And they have seen a correlation of a history of facial weakness on the opposite side of the CCSVI side. This would be yet another indication of where the blockage may be in certain people. Taking a thorough sign/symptom history should be part of the exams pre-op. ( signs are seen by the Dr, symptoms are described by the patient)

I am just wondering how many had a similar event history and then were diagnosed with a blockage on the opposite side or had facial swelling (edema/ puffiness) which abated after your venoplasty?

I have noticed in several patients on YouTube that post venoplasty their facial contours seem thinner and less " puffy".

(I'm the eye doc who is running clinical trials, one sponsored by Optos...).

TONS of people with Ehlers-Danlos (and MS, it appears) complain of intermittent facial puffiness. I tease that I never know who I'm going to look at in the morning -- Diana, or her ugly twin "Puffy Diana"!

I was assuming it had something to do with our leaky vessels, and am looking into cytokines and mast cell disorders. But it deserves much more attention, and I'm so glad you brought it up.

Bell's Palsy -- another condition that is poorly understood! As eye docs, we always assumed it was a viral attack on the third cranial nerve (and then some), and we usually treat it with steroids (which is what we do when we don't have a clue as to what to do...). But Bell's Palsy usually takes a minimum of 2 weeks or so to go away (sometimes much longer, and sometimes it never goes away). It sounds like your daughter's goes away quickly, am I right?

I noticed that the right side of my face is "droopier" than my left, and I can see that in my videos (shameless plug for Prettyill.com). But I also noticed that my right arm doesn't swing when I walk like my left one does, and I have clonus on my right side. I'm not a huge believer in coincidences.

I have had angioplasty, but it is hard to say which side was more messed up! So that doesn't help me figure it out...

GREAT question. I think we should do an informal "pilot study". "Is Bell's Palsy more common in MS patients than the general population?" I wonder what the best way to get out that question would be?

Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea

I don't know what mine would be referred to.
When I would wake up in the night, my right side of the face (espicially around the eye) would be "slow" to wake up. My right eye would remain closed when the rest of me would be awake and it would take about a minute for the feeling to come back to the eye area and begin to open.
I haven't had this much since I have been seeing an atlas adjuster chiro.
My right IJV was 90% stenosed, left was 75% and azygous was 80%.
I don't know if that is related to my weird facial symptoms or not.
(this would happen almost nightly)

I must confess I am not good enough to interpret the drawings you sent me. My clot is in my right IJV. My trigeminal neuralgia is in my right cheek. I think my right eye feels affected but I don't know. I usually cover it up when I get double vision. My double vision happens when I look right. It is much improved; now it's just one eye catching up with the other. Worse when I am tired or hot.

My drop foot is the left. Not sure when I got this but if I have had any disease progression at all it has been a numb patch on my right leg. No fine motor problems on that side, just numbness on hand and leg. Strength and motor problems all on left.

When you look to the right, do you know which eye is not following properly? Can someone else look at you and tell?

If I was a betting woman, I'd put my $$ on your right eye doesn't go all of the way to the right when you look to the right. Am I right??

If that is the case, be sure to turn your head to the right when you can, if you need to look to the right.

The VIth cranial nerve controls the lateral rectus, which is a long and tortuous nerve and is "low hanging fruit" for damage. I could be wrong, but just curious...

Sorry the diagrams were more than you wanted to see! The take away for vision, though, is that it's a mash-up of right and left sides of the brain and of the visual field. It's not a "one side controls one eye", etc.

We wouldn't want to have anything too simple, now, would we?

Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea

Oh, I missed it!? Munchkin, if it's the left eye that's not tracking when you look to the right, that means your third cranial nerve is affected.

Usually if that nerve is affected, that eye has a slightly droopier lid and the pupil doesn't react as well as the other eye. Do you notice either of those things?

If not, that's GOOD! It means it's only partially affected.

Knowing this, be sure to turn to the LEFT when you look at something.

Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea

I have smaller sized glasses so I have always had to turn my head fully to see properly. Haven't noticed any droop in the eyelid and I really don't know if there is a difference in the pupil reaction time.

My neuro was thinking about taking my driver's license away until I told him that as long as I turn my head fully either way the double vision is fine. Just can't turn my head too quickly or the eye jerkiness can affect me strongly.

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